My Health Care Issues

Over the course of that year, I was diagnosed with concussion syndrome, fibromyalgia, a brain tumor, PTSD, panic attacks, depression, and finally, reluctantly, lupus.

My GP and several specialists suspected lupus but were reluctant to run the definitive tests for it for fear of me losing my insurance when I was so sick. Because I researched lupus when realizing it was a possibility, I knew that it was not a good idea to leave it untreated so I aggressively pushed to get the lupus antibody test. At the end of my insurance they finally gave me that test.

At almost every visit, I kept saying, "All I want is to get treatment so I can be well enough to work."

I also kept trying to get treatment for the fibromyalgia and the seizures. For some reason the neurologist had a wait-and-see attitude hoping the concussions had caused them and that, in time, they'd go away on their own. Instead of prescribing anti-seizure meds he just took me off my anti-depressants and prescribed me propranalol for my PTSD instead. That drug may cause problems in people with hypothyroid disease which I had been diagnosed with years before and had mentioned to him. Of course, it did cause problems. I could barely stay awake and my hair was jumping ship like rats from a ship on fire. A thyroid test determined that now I needed double the dose of thyroid replacement hormone I'd been taking.

I tried to get my rheumatologist or GP to prescribe Lyrica for the fibromyalgia. Lyrica seemed like a match made in heaven because it treats seizures and fibromyalgia. Instead, I was prescribed assorted pain killers for the fibromyalgia, told to get more sleep (as if that is easy when a person is in chronic pain) and exercise and again, nothing was prescribed for the seizures.

The fevers just kept going on, undiagnosed but well documented, and they, too, went untreated.

Because waits for specialists are so long (2 to 4 months, usually) the year while I still had health insurance was eaten up very, very quickly with little really getting done to fix me up so I could get back to work.

Meanwhile, I was living off of my savings and my divorce settlement. Both were completely gone by February of 2008. Co-pays on diagnostic tests ate up a lot of it and the rest went to living expenses. At that time, I filed for Disability and applied for Medicaid, Food assistance, and Cash Assistance.

That was my biggest mistake. I should have filed for Disability when I was first unable to work back in May of 2007 and the other types of aid before my cash ran completely out.

The Department of Human Resources worker processed my application for Food Assistance and I soon began receiving that benefit. But apparently, she hadn't processed the other two items, the medical assistance or cash assistance applications.

When I never received a letter denying or approving me for either of those programs (which should have both arrived inside 45 days according to the brochure) I called her. I left a message and when I got no call back a week later I left a message every day for about a week before she accidentally answered the phone. When I explained the problem she first chastised me for calling too many times and told me that Michigan has no program for single people unless they qualify for Disability. When I expressed my fear about my seizures increasing in frequency and being untreated she dismissed my health care issues as trivial. She told me I probably wouldn't be covered because "seizures are no big deal and usually go away with medication" and that I probably wouldn't qualify as requiring medical aid. Then she told me that the Cash Assistance was only $200 a month and that wasn't much money so it wouldn't have helped me much anyway.

During that time period (between February and April of 2008) the programs in Michigan for non-parent adults had indeed dried up so there was no reapplying for those programs

My application for Disability seemed to go well, the man I dealt with was polite and respectful (unlike my dehumanizing experience with DHS) and the brochures I received made me confident I'd shortly be getting the Social Security Disability Insurance my employers and I had paid into all my adult life.

I had to get paperwork filled out by my doctor. I figured this would be no problem - he'd treated me while I was, in his own admission, too sick to work. But he refused to fill out any of the paperwork claiming that, as a policy, their office just doesn't fill out Disability paperwork. The doctor's office referred me to someone who would - the hospital affiliated with their medical business.

I called the number they provided and was told that I could get a Disability exam for $500 after which they'd fill out my Disability paperwork for me. I had no insurance and no money so I called my contact at the Social Security office and he directed me to just get my medical records then. I got my medical records which, when I read through them, left me confident of getting some kind of help - there were a years worth of notes documenting all of my symptoms and the diagnoses I had received.

I got more SSA paperwork in the mail which I filled out and then a friend received some to fill out about me, I assume to serve as a witness to my condition in case both I and my doctors are lying.

Months later I was scheduled for an examination. I was quite excited until I discovered it wasn't a physical examination (which I felt sure would qualify me) but a psych evaluation. Because I have PTSD and depression and mentioned my rabid fear of becoming homeless and suffering the rapes and assaults again they evaluated me to see if I could function mentally. They also tested me to see if I was mentally retarded.

Because I can interact with people mostly normally and I'm not mentally retarded it was deemed that combined with my other health care issues I could still hold my old job as a florist and thus do not qualify for Disability.

My reaction was ...complete depression. I got the letter and completely freaked out. Along with it came other information which stated that to appeal, I would need new medical information and be under a doctor's care.

I have no money so how could I be under a doctor's care? I couldn't get medical aid unless qualified for Disability and I couldn't get disability unless I was under a doctor's care. You can imagine the mental tail chasing this caused. I could see absolutely no solutions to my health care issues.

Fortunately, by that time I had a loving and supportive (if financially very poor) partner. He found me sitting outside my apartment complex in the dark where I was trying to talk myself out of doing something stupid. My fear of becoming homeless again is indescribable. I will die if I can before it happens again. I will not be raped or beaten again. I will not be harassed or demeaned that way again.

My partner talked me down and impressed upon me how much it would hurt him if I committed suicide.

I'm so bloody frustrated. I just want to be well enough to work a day job. I'm a hard worker, I kept working through the fevers, pain, nausea and vomiting until I had too many losses of consciousness resulting in absences. I kept getting jobs and losing them for too many absences - or from becoming disoriented on the job - getting carted off to the ER - or from being seen taking prescribed pain medication to be able to stand. I can't help losing consciousness, becoming delirious, or being in pain. It makes me so angry. My job was part of my self-worth. I was good at it. I was an award winning florist and worked at the highest end shops in the city.

I miss being good at something and delighting people every single day. I miss helping brides make their wedding day special, I miss helping them squeeze the biggest, high-style bang out of their buck. I miss helping people create tributes and celebrations of life. I miss the beauty of the flowers. I want it all back. I'd settle for any job to feel useful again. I feel like such a whiner for saying so.

I'm surviving on my freelance writing income and with the help of my partners and friends. The $200 per month of Food Assistance has been an enormous help. It has made at least one thing in my life stable and gave me the knowledge that every penny I earned could go towards my rent and medications.

Since I can't afford a doctor to provide new medical information, I've been doing my best to earn money as a gig writer and to try to make a living at it. With the help of that Food Assistance I've been just barely getting by. My hope was that I'd be able to get together enough money to get the medical care I need to get treated and get back to work. My partner has been helping with this and chasing after better jobs so either he can afford to pay for my medical care or he can have insurance to cover my health care issues.

Last month my semi-annual contact forms were due at DHS. That is paperwork recording things like my income and expenses. I got them in more than ten days before they were due. My partner hand delivered them to the DHS office.

Half way through last month I got a letter stating that my Food Assistance benefits would be cancelled for failure to return my semi-annual contact forms. So I called my worker and got the same runaround with the non-answered calls again. Again, with persistence I got lucky and she eventually accidentally answered the phone. She told me I wasn't supposed to keep leaving messages that one was enough. She said she was between clients but really couldn't talk. I pushed the issue and she admitted that yes, she'd gotten my paperwork and it was in front of her. She then admitted that the papers didn't get processed because she'd been on vacation but that they would now.

Fast forward to the beginning of August. I went online to check my Food Benefit balance and it had not been updated. There was no new food money in the account. So I called the worker, again leaving one message a day. This happened to occur when my partner was out of town. So I had a bit of a meltdown. But with encouragement from friends I managed to survive that emotional meltdown.

With repeated calls to my worker I was again able to get her to accidentally answer the phone - presumably ringing in exactly when she was picking up to dial out. She told me I already left a message and that I wasn't supposed to leave more than one message - that she returns them when she gets to them. She said that she'd call me back when the problem is resolved - as if! I asked if the lack of a refill on my card had anything to do with her failure to process my paperwork and she told me "absolutely not" and again chastised me for calling. I told her that I had no way of knowing if she was dealing with the situation or not without feedback. She said that it was her job to deal with the situation.

I'm giving her a week from the day I got through to her to call me back or resolve the situation, and then I will physically go to the DHS office and wait through the lines and jump through the hoops to reapply if necessary. In the meantime I will be borrowing a phone to research local clinics. Perhaps one of them may provide a solution to my health care issues. I've researched local food pantries and there is one in my area that I can visit once our food runs out.

Tuesday, August 18, 2009

Thanks again for all of your wonderful support and encouragement.

So I waded through all the hoopla only to find out that one cannot go to the office and see someone the same day unless you are applying for aid. I was told to call the main number and get the name of my worker's supervisor.

I borrowed a phone today (good thing, too, because my phone has less than twenty minutes left on it) and called the main number. I started at number 30 in the queue according to the recorded voice and after about twenty minutes I was at number 25. Then I heard the phone ring - I thought a miracle had happened and I'd gotten through! But no, I'd somehow gotten disconnected. So I called back, navigated through the menu and waited for one hour and forty-seven minutes on hold until I reached the general operator. She gave me my worker's supervisor's number and transferred me to the supervisor's phone.

Of course the supervisor was not available to take the call. So I listened to her message which said to leave my name, social security number, case number worker name and a brief message. It also said that return calls may not occur for all messages! I left my message, including all the requested data and a summary of my problem. Then there were two options - I could press one or two for an urgent message or not - I pressed for an urgent message.

Then I hung up and started crying. You can't even go to the office and talk to someone and you can't even reach a supervisor. There's no guarantee the supervisor will call me back. Her answering machine even says she won't necessarily call back!

A friend helped me find the regulations - apparently workers in Michigan must call back within two business days then you are supposed to contact their supervisor.

If only my worker had processed my application for medical assistance back in 2008 I wouldn't be her problem any more! I'd be back in the workforce earning my own damned bread. I know if only I could regularly see a doctor long enough to get the fevers diagnosed and treated, I could get back to work.

Friday, August 21, 2009

Thanks for all the kind words, aside from my partner the folks here at Squidoo are most of the support I've gotten on this issue.

Still no call from my worker's supervisor. I called and left another message for her and left another on my worker's phone. I just wish there were a way to actually talk to someone.

I even left a message on my worker's machine telling her that I just want this issue resolved and there will be no hard feelings.

I know I am probably not even human to these people so I don't even know how to deal with them. I'm not even good dealing with normal people who can see that I'm a human being. I'm autistic, sure it's only Aspergers but it makes spoken communication extremely hard already. I'm in so far over my head that I have no idea how to even get heard. They probably see me as some kind of sub-human criminal undeserving even of a returned phone call - and add my awkwardness and ignorance (and terror) in dealing with people to that and they probably just hear my clumsy phone messages as proof that I'm not a real person.

Wednesday, September 23, 2009

I haven't updated in a long time. I've been pretty sick so my writing efforts have been mostly confined to paying work only. I've had a bad flare which has resulted in more high fevers and seizures and has increased my need to just rest.

Anyway, I got my food benefit re-instated at the beginning of September which has made things much easier.

I have gotten a lot of wonderful suggestions from Squidooers including a fabulous one which allows me to see a doctor where I can pay in installments. I've also received some very generous and heartfelt donations from my Squidoo family for which I am extremely thankful.

So far, nothing new has been determined about my conditions but I will keep you posted.

I am overwhelmed by the Squidoo response to my troubles. People have been more than generous with excellent suggestions and support.

I am also extremely grateful to the people who have used my tip buttons to help me out. Every penny is greatly appreciated.

Again, my thanks and gratitude go out to you.